Welcome to A Ballsy Sense of Tumor, aka ABSOT. This is my personal blog where I share my testicular cancer story in an effort to promote more awareness about men's health. Sharing my story to spread awareness and promote open conversation about men's health.
After Attending Mental Health America 2019, I Took a Good Look at My Own Mental Health
While a clear focus of ABSOT revolves around raising awareness about men’s health and testicular cancer, I’m also very passionate about discussing mental health. I’ve said time and time again how I’ve experienced depression twice in my life: once in high school and still ongoing since after remission from cancer.
I know I’m not the only cancer survivor experiencing mental health challenges. Since realizing my struggles, I’ve been pretty open about my mental health journey, writing about asking for help, medication adjustments, and more.
My original title for the panel was “Sad, Bleeding Ballers,” but Al (middle) and Dakota talked me out of it.
Al’s main area of advocacy is men and depression, while Dr. Dakota and I mainly advocate for other conditions (hemophilia and cancer, respectively). All three of us have gone through depression, with Dr. Dakota and I experiencing it after our primary diagnoses. With this fact in mind, we titled our session “An Indiscriminate Foe: Three Stories of How Depression Can Exist Among Many Different Conditions.” Full transparency: Al and Dakota did most of the work and I just sort of looked pretty and made bad ball puns.
Each of us took time to share our personal stories, how it affects our larger health communities, and how we want to break down the stigma surrounding mental health.
Our session seemed well-received but I was more impressed with four other presenters.
During breakfast, motorsports and automotive journalist, Steven Cole Smith, interviewed off-road racer and mental health advocate, Justin Peck. Peck shared his story of attempting suicide, only to be saved by a rare misfire of his gun.
Beyond our shared name and affinity for facial hair, I drew a parallel to our stories as he shared about being mistreated throughout his schooling. I was bullied mercilessly in middle school, but chose not to speak about it for many years. Looking back, I always wonder how it impacted my mental health.
Justin, meet Justin
There’s another connection between the two Justins. We both see our health challenges as blessings and how the struggles helped us to become the people we are today. Peck summed it up nicely by saying, “The struggle brings character. Without character you’re nobody.”
Another session led by a brother and sister team was awe-inspiring.
When Hannah Lucas was diagnosed with POTS, a fainting condition, at age 15, she also fell into a deep depression and self-harm. She came up with the idea of an app where she could press a single button on her phone to alert someone that she was in need of assistance.
Her brother, Charlie, took her idea and built the notOK app. They ended up launching the app in January 2018, with over 70,000 users and over 45,000 alerts sent to date. The app is relatively simple to use, but also genius. From the website:
Register and confirm your email address and cellular number.
Add up to 5 trusted contacts, using your native address book or manually.
Your trusted contacts will then either accept or decline the invitation.
Once your trusted contacts are confirmed, you’re all set!
When you need to reach out for help, simply open the app and tap the large, red notOK Button.
A message along with your current GPS location will be sent to your contacts that reads: “Hey, I’m not OK! Please call, text, or come find me.”
Update your support crew when you’re feeling better by pressing the green button.
While that’s amazing, I was more impressed with their transparency “with the people who you are around every single day – including yourself.” When asked how she manages to keep going, even at her lowest moments, Hannah eloquently stated, “It’s the choices you make in spite of what you’re going through.”
I’m either really tall or Katelyn is short
Finally, over lunch, we listened to one final talk.
Katelyn Ohashi, a world-class gymnast, was interviewed by ESPN’s Holly Rowe. While Ohashi is quite literally a perfect ten, she experienced cyber-bullying and weight shaming, which led to mental health struggles. Over time, with the proper level of help and support from her mother, she eventually moved past it. She shares her story, even the embarrassing parts, so that others do not feel alone.
A few of her tips to find self-love include learning “how to be enough by questioning why you would be so terrible to yourself” and “learning to love everything that you think isn’t normal.” Luckily, those were tips I could reflect on and she didn’t insist on me trying to learn to do a split.
As I drove home, I thought about my own mental health.
Sharing my story and being surrounded by mental health advocates made me take a critical look at my own emotional well-being.
While I’ve been on antidepressants for just over a year and a half, I haven’t resumed any sort of therapy, since giving it a half-assed (or half-sacked) shot in April-June 2017. I managed to convince myself that I didn’t really need it, but upon reflection I realized I do.
As I shared in late June, I’ve been experiencing some weird symptoms lately, including excessive sweating, unintended weight loss, and difficulty sleeping. My thyroid and testosterone levels have come back as normal. now I get stuck in that limbo of trying to figure out the reason.
Is it just a side effect of the antidepressants? Caused by stress? A new cancer forming?
While I don’t know those answers yet, what I do know is that I don’t have the ability to handle my feelings by myself. Paired with some other challenges in my personal life, I’ve decided to start going to therapy again in mid-July.
Why didn’t I start immediately? My biggest complaint with my last therapist was that I couldn’t connect with her. This time, I looked a male therapist who specializes in men’s issues, anxiety, and depression. When I gave him a call a few days after the conference, he said he was going to be out town until July 8th.
Every single picture of me speaking at every conference has this exact pose.
I decided I was not in an immediate crisis and called him back a few days later to leave a message. I said I wanted to begin regular mental health sessions to unpack a lot of feelings about cancer, life, and other topics that I’ve just never fully worked through.
So this entire post is a very roundabout way of saying I can do better.
While I’ve been publicly open about my mental health challenges, I need to start taking better care of myself on a personal level. As a cancer survivor, someone who has gone through depression twice, and as a human, I know my mental health and overall mood is going to ebb and flow, but I want to do what I can to make sure I’m heading in the right direction.
By writing down a concrete timeframe (my first appointment is next week), I’m hoping that it holds me accountable to the world… aka the three people who read this blog. Hi mom!
To the conference organizers, speakers, and audience members of Mental Health America 2019, thank you. Though this reflection is about a month overdue, it needed to be said. Not only was it a great conference, but it was also exactly the day I needed to realize what I truly need to support myself.
Sharing Your Story of Cancer’s Impact is Critical to You and to Others
Sharing my story has been a crucial part of why I began ABSOT. It’s what has kept me going day in and day out for over two years. Recently, I collaborated with with New Life Outlook on writing posts for our respective websites. They wrote the following piece on the importance of sharing one’s cancer story. After finishing this post, be sure to check out the piece I wrote on their site, entitled “Getting Back On Track After Testicular Cancer.”
Every day, you come face-to-face with countless questions and decisions to make. Many of them involve some level of pain, sacrifice, and cost, which adds tremendous uncertainty and confusion to the choice. When you’re dealing with a cancer diagnosis, or are undergoing treatment, these decisions become even more difficult.
Though it may be impossible to get any clarity in life, there is one decision that always makes sense. For you or anyone in your situation, sharing the story of cancer’s impact is always the right decision. Letting others know about your first-hand experiences—both positive and negative—will help them in many ways.
Your Cancer Story
To begin, your cancer story is simply your experience with cancer. It is a way for you to describe the trials and tribulations, the terrors and triumphs, and the pains and promise of your condition.
The most crucial aspect of your cancer story is that it does not have to be a certain way: no two stories will look or sound the same, because each experience is different. Your story of cancer’s effect on your life is a wholly unique narrative from your own perspective.
Your story could be a detailed, chronological journey through every step of the process from the first warning sign to your most recent follow-up scan. Or, it could be an expression of your feelings in poem, painting, or video form. There is no right or wrong way to tell your story.
Your cancer story could involve your direct, personal experiences with the diagnosis, your time watching a loved one with the condition, or your professional work caring for people with the disease. Just because you have not had cancer does not mean you don’t have a cancer story worth sharing.
By now, you’re probably wondering why anybody would be interested in sharing their cancer stories, and why another person would be interested in hearing it. You may think there is too much risk associated with telling these experiences.
The biggest risks of telling your story are:
You will bring up all of the unwanted thoughts and feelings about your cancer, and you will be left to relive the experiences.
You will trigger unpleasant memories of others who have been deeply affected by the disease.
Undoubtedly, sharing any story of personal pain is sure to stir up some issues, but this is not a problem. It is a positive facet of the experience.
Of course, the risks are present, but with no risks, there are no rewards. The rewards of sharing your story far outweigh the potential harms.
For you, cancer is all about loss. Even if you triumph over your diagnosis, you experienced a life-altering loss. You lost your sense of health, independence, power, and control.
Losses do not only get better by being ignored. Instead, when swept under the rug, they are left to grow, fester, and seep into other areas of your life.
Only by bringing losses into the light can you appropriately grieve and mourn the stress of the experience. Telling and retelling the story is one of the key elements to any healthy grieving process.
For others, cancer is all about the unknown. If they are beginning their journey with cancer, they have no idea what is around the corner or what the next appointment holds.
Hearing, reading, or seeing your cancer story can provide much-needed insight into what lies ahead, which reduces anxieties. With lower stress, others can begin to build hope and trust in the treatment process while building realistic expectations of what’s to come.
Cancer’s Power to Isolate
Cancer is an isolating disease. Even though people may be surrounding you and giving their love and support, it can make you feel awfully alone.
Perhaps the most significant impact of sharing your story about cancer is the connection it forms. With connections in place, you feel less isolated, and experience a heightened sense of belonging.
At first, sharing your thoughts, feelings, and behaviors related to cancer will help you feel connected to yourself. Too often, people avoid and dismiss their experience, which results in painful moments later.
Second, sharing your thoughts will connect you to other people at various stages and levels of cancer involvement. Despite cancer’s power to isolate, cancer can actually bring people together because the condition touches so many.
Third, sharing your story helps others connect to themselves and their loved ones. Your one story can create change in the lives of so many.
Methods of Story Sharing
Sharing your story does not need to occur on a grand stage. An audience of just one is enough to make your story sharing worthwhile.
If you’re ready to share, consider:
Talking to friends and family
Making a thoughtful social media post
Attending support groups for people with cancer
Contacting cancer associations in your area
Just as there is no wrong way to create your story, there is no wrong way to share it.
The Win-Win of Honesty
Some choices are selfish with outcomes that only seem to benefit you and your best interests, while other choices seem selfless as they only result in results that help everyone else. Sharing your cancer story is the perfect balance of selfish and selfless because it benefits everyone equally.
Honesty is often a difficult proposition, but it doesn’t need to be. Being truthful with yourself and others is the path to acceptance, patience, and understanding.
NewLifeOutlook aims to empower people living with chronic mental and physical health conditions, encouraging them to embrace a positive outlook despite unfortunate circumstances. Their articles are full of practical advice from people who have firsthand experience of living with a chronic condition.
I Sit Down to Discuss Colon Cancer and the One Percent Podcast with Survivor Truitt Taylor
June is Men’s Health Month, and I’m spending the month highlighting various advocates for different conditions that affect men. Earlier this month, I shared an interview with Wayne Dornan, a male breast cancer survivor. I also recently spoke with Truitt Taylor, the owner of Taylor Design Shop, host of the One Percent Podcast, and a seven year colon cancer survivor.
ABSOT: Tell me about the man beyond the cancer.
Truitt Taylor: After spending 10 years in higher education, I decided to leave the education world to start my own custom furniture and contracting company. My craftsmanship and designs have been featured in several home magazines in the Atlanta area.
In addition to my design business and podcast, I enjoy public speaking, baseball and spending time with my wife, Clare. We live in Atlanta, GA with our dachshund, Blue.
ABSOT: Let’s get into the your cancer story. How did you discover you had colon cancer?
TT: I had a pain in the lower left side of my abdomen and I noticed some changes during bowel movements. My doc actually told me that the worst case scenario was Crohn’s disease. This diagnosis was crazy to me since I never even had a cavity.
ABSOT: What surgeries and treatments did you go through?
TT: I had a colon resection where they removed twelve inches of my colon. I had surgery to place a port in my chest. Following this, I completed ten rounds of chemo and twenty-five rounds of radiation.
ABSOT: What did you know about colon cancer before going through it?
TT: I didn’t know much. My only experience was hearing about older adults having to disease.
ABSOT: How and why do you share your story?
TT: In the midst of starting my furniture company, I launched the One Percent Podcast. On the podcast, I interview fellow cancer warriors, survivors and caregivers in order to inspire hope and develop relationships in the cancer community.
There are a lot of healing properties in storytelling. My goals are to help my guests continue to heal and allow all of my listeners an opportunity to connect to a positive cancer community. People need hope, faith and inspiration and we connect with those needs through discussing topics of mind, body, and spirit.
I share my story to bring awareness to the rise in colon cancer among young adults. Colon cancer is the second deadliest cancer for adults 20-45 years old. I also feel it’s important to address the mental health side of cancer and how it impacts your identity, especially as a young adult.
The One Percent Podcast has been downloaded in over 20 countries and continues to serve the cancer community by creating awareness and highlighting the mental health challenges of a cancer diagnosis.
ABSOT: What do you want all men to know about colon cancer?
TT: Three things come to mind:
Go get screened at the first sign of blood in your stool or persistent pain in your abdomen.
You’re never too young.
If detected early, colon cancer is one of the easiest to treat.
ABSOT: What message do you want all men to take away about health matters in general?
TT: I want men to be open about discussing health and mental health issues in a greater way. Being masculine is about courage; it’s not about pretending to be tough.
ABSOT: Any other last minute words for our readers?
TT: I’ve had plenty of traumatic events in my life: my parents’ divorce, my father’s motorcycle accident (which left him as a quadriplegic), my brother’s suicide, my divorce, and my cancer diagnosis. Through it all, I still have faith and tons of gratitude each day and am in love with life.
I feel a responsibility to show vulnerability, masculinity, patience, kindness through all my actions and my voice on the podcast.
Hugo Toovey, Self Proclaimed “One Nut, Half a Gut,” Founded 25StayAlive to Encourage Young People to Be Proactive With Their Health
Welcome to the Band of Ballers! In this series on ABSOT, I’m turning over control to some other ballsy testicular cancer survivors and patients who have inspired me with their work in advocacy and awareness during and after their diagnosis. This month’s feature is all about Hugo Toovey, who founded 25StayAlive. Enjoy!
In 2013, I was a young, fit, and naive 21-year-old. I was in my final year of Army training at the Royal Military College, Duntroon, Australia. My life was, by all accounts, relatively normal.
That was until it took an unexpected turn in June, when I received the unexpected news that I had testicular cancer.
After leaving the doctor’s room, I smiled at the receptionist, walked to my car, and burst into tears. I felt alone and lost. I felt so vulnerable. Knowing I had a long journey ahead, I was frightened.
Once I came to terms with everything, I went off for surgery to remove my cancerous testicle. I did find it mildly amusing when I was picking out which prosthetic testicle I would have. There were different makes and sizes. I remember my surgeon telling me that some guys choose to opt for a bigger size… I just told him to match it up with the other guy. (Editor’s Note: I personally wanted a BB8-shaped one, but Disney wouldn’t let me so I went au natural.)
For the majority of testicular cancer cases, surgery to remove the affected testicle is usually the only treatment that is required.
That is why the importance of early detection is crucial… and something I soon learned the hard way. Unfortunately, the cancer had spread to my abdominal lymph nodes.
I still managed to graduate as a Lieutenant, but my Army career was put on hold. I commenced four months of intensive chemotherapy back home in Adelaide.
It was a bittersweet feeling. On one hand, I had just graduated as a Lieutenant in the Australian Army after four years of arduous training, but on the other hand I was about to undertake months of chemotherapy.
Lying in hospital with my exceedingly good-looking bald head, my pale, skinny frame, and the constant feeling of being sick and fatigued, was not exactly where I thought I would end up… especially as a 22 year old who had just graduated as an Army Officer. I wasn’t your typical “cancer patient”.
After chemo, I still required RPLND surgery – an 8 hour, very invasive operation to remove all my abdominal lymph nodes.
After weeks in the hospital I was finally discharged, and I embarked on a very lengthy recovery and rehabilitation journey.
It wasn’t until the end of 2017 when I was promoted to a Captain in the Army. It was a huge milestone in my life, and I was extremely proud. I was fit, healthy, and most importantly, I was happy.
The next milestone came in June 2018 when I had my 5 yearly scan…which was all clear! This felt like even a greater achievement than being promoted to Captain, as I was finally in complete remission.
It was a strange feeling, but I felt free…and for the first time in a very long time, I felt normal again.
Unfortunately, this feeling was short lived.
Two months later, after having a routine colonoscopy, my whole world came crashing down yet again when I heard some unwanted, yet somehow familiar words from the doctor. “I am sorry to say, but you have bowel cancer.”
My head was spinning. Bowel Cancer? But I aren’t too young? Didn’t I just have a clear scan for testicular cancer? I remember literally asking the doctor if he was sure he had the right person… unfortunately he did.
I walked out of the doctors rooms and completely broke down. It was so much to take in emotionally and I was devastated. Once I had time to process everything, I broke the news to my family. Actually saying the words “I have bowel cancer” to my family, whilst fighting back the tears, was one of the hardest things I have done.
I was booked in for surgery two days later. The surgeon did an amazing job and removed about 90% of my colon, which was riddled with cancer. (Editor’s Note: I guess this would make it a semicolon now?)
After a week in recovery, I appeared to be recovering well, and the day had come for me to be discharged from hospital.
Yet life can be full of surprises, and once again, life had another shitty (pun intended) bump in the road.
Just as when things were starting to look up, I started experiencing the most excruciating pain I have felt in my life. The head nurse soon realised it was serious, and called the emergency button. Before I knew it, I was back under the knife for emergency surgery.
My remaining bowel had somehow severely twisted and kinked. My surgeon hadn’t seen something so extreme for over 15 years, and the head nurse later said that after being in the ward for over 20 years, this made her ‘top 3’ most memorable moments. Not exactly a list anyone wants to make. But hey, I made it.
I spent the next three weeks in the hospital not being able to eat or drink, and I lost over 20kg (roughly 45 pounds). I never admitted it at the time, but I was definitely depressed. Every day that went by, there was no improvement. I was literally waiting for my stomach to “wake up”.
Like anything in life, the fear of the unknown can often be the most difficult part.
Eventually the day came when I was discharged. It was honestly a day that I did not think would ever come, and there was no greatly feeling than leaving the hospital with my beautiful partner, Amber.
It has now been about 9 months since being in the hospital, and although not every day is perfect, I am doing pretty well. I am still on active treatment, I still require colonoscopies every six months for the rest of my life, and I still have days were I struggle mentally. But what I eventually realised, is that I am actually one of the lucky ones. Sadly, there are too many people that eventually succumb to this terrible disease.
If I have learnt anything over my two battles with cancer, it is the importance of early detection.
What I learned from putting off seeing a doctor with my testicular cancer, ended up saving my life with my bowel cancer. I am more passionate than ever to share my story and raise awareness to other young people to realise they aren’t invincible. Something like cancer doesn’t discriminate, and I am living proof of that.
Since sharing my story, I soon realised that there were so many other young people out there who had been affected by cancer. There seems to be so much emphasis on our health when we turn 50, almost as though that’s when we should start taking our health seriously.
But why 50? When I was diagnosed with testicular cancer at only 21, I knew NOTHING about cancer, let alone testicular cancer. Yet testicular cancer is the most common cancer in young men aged 16-30.
When I was diagnosed with bowel cancer at 26, I knew NOTHING about bowel cancer. Yet bowel cancer is one of the fastest growing cancers in young adults.
That is when I started 25StayAlive.
The mission of 25StayAlive is, “25 is the new 50…know your body, know yourself. Being proactive and in tune with your body at a younger age, might just save your life one day.”
Although ’25’ symbolises a typical young adult, and encompasses all ages, I would love one day for there to be a government initiative whereby when you turn 25, you are sent a full blood test in the mail. 25StayAlive aims to make you think differently. No different to when you turn 50 and you get sent a bowel cancer screening kit. (Editor’s Note: I am not sure if this is an Australian thing or not – Stay tuned!)
Similarly, the 25StayAlive Podcast was created to give other inspirational people a platform to share their stories.
One of those stories was from an amazing young lady called Dahlia, who is quite literally facing bowel cancer with a smile. I loved everything about her, and soon enough, she was on board as the co-host! We both experienced the devastating effects of cancer first hand. By sharing our own experiences, we hope to educate and inspire others from all walks of life. Life is precious, and you don’t want to take it for granted.
The 25StayAlive podcast isn’t all just about cancer either. Although we have both been affected by cancer, and we do get a lot of cancer survivors on the show, we have also interviewed a young quadriplegic, a war veteran who lost both of his legs, an AFL athlete, and a positive psychologist.
A lot of the topics we discuss can be quite intense, but there will always be a lot of laughs, and every episode finishes on a positive.
It has been so rewarding to not only meet such incredible people, but to receive messages from listeners who have said how the podcast has changed their life. It makes what we do worthwhile when you realise you are making a difference.
I hope these endeavors encourage a young 25 year old to start actively thinking about their health, and puts them in the mindset of looking after themselves. We shouldn’t “fear” going to our doctor.
I’ve Talked A Lot About My Mental Health After Cancer, And My Physical Health Is Critical, Too.
Prior to my testicular cancer diagnosis in 2016, I hadn’t been to the doctor for any reason since 2014. Nowadays, things are much different. I have follow up scans and routine blood work, but this isn’t what I mean. I’m talking about how I actively choose to seek out doctors when I am feeling unwell. Taking care of my physical health after cancer has become paramount.
Back in the era of 2014 Justin, I remember going to work with flu-like symptoms.
I’d be barely able to breathe, incredibly achy, and burning up, but I would still refuse to see a doctor. Since October 2018, I’ve had four bad sinus infections that have knocked me on my rear end.
For three of the four of them, I went to see a doctor soon after the onset of symptoms. Each time, within an hour, I had a prescription for antibiotics, tips for over the counter relief, and an order to rest. Within twelve hours of beginning the medicine, I could feel less sinus pressure and stuffiness. By the third day, I felt completely back to normal.
This is technically 2015 Justin, but just roll with it
This is a stark contrast to 2014 Justin, who would suffer for weeks on end with these same symptoms, but I didn’t want to see a doctor just because I didn’t want to see a doctor. I would rather be miserable for weeks than talk to a person who could fix the issues for one hour.
I take a similar proactive approach to when I’m experiencing pain, too.
In 2013, I adamantly thought I could fit a ten pound roast in a five quart crock pot. To be fair, geography was never my strength. Needless to say, no matter how hard I tried to carve the pork shoulder down, it wouldn’t fit. However, I did manage to slice my finger open.
Even though I was losing a lot of blood, in immense pain, and feeling woozy, it took phone calls from both my mom and Mallory to convince me to go to the ER… where I then received several stitches, and have permanent nerve damage to this day.
Compare this to present day Justin. I regularly see a chiropractor for neck, spine, and back pain. After the two fold punch of Tough Mudder and weird pull up injuries this past week, I am convinced this man is an angel of some sort. I even go when I don’t have any immediate pain as a preventative measure.
Focusing so strongly on my physical health after cancer does have some downsides on the mental health side of things, however.
Remember four paragraphs ago when I said I went to a doctor for three of my four sinus infections? (Side note – I realize a lot of my readers may be dealing with chemo brain, so no disrespect if you didn’t remember.) I didn’t go for my fourth, and most recent, episode because I already had an appointment scheduled at Dr. Maurer’s office for my summer bloodwork.
After the nurse told me my tumor markers were normal, I brought up the sinus issues and she recommended to start on allergy type regimen (as I am pretty sure I am allergic to something in my school), complete with Zyrtec and nasal sprays. Joy.
They had the video from Dr. Maurer’s and my morning news appearance in the room
She also asked if I had any other symptoms I wanted to discuss and I mentioned that I’ve lost a fair amount of weight without trying recently (#humblebrag) and have been excessively sweating, even when sitting in air conditioning and while sleeping… with two fans blowing on me and in minimal clothing (too much?)
Upon hearing this, she decided to order a thyroid level test and suggested getting a hormone level test, too. The nurse said that she wanted to rule out the more common issues before looking into more serious causes.
Being the brilliant person I am, I asked what she meant by more serious causes.
She said given my cancer history and specific cocktail of drugs used, there’s always a chance of a second cancer, such as lymphoma or thyroid cancer, developing. Cancer continues to be one of my biggest fears (right after the Easter Bunny – I mean, a giant rabbit leaving treats? No thank you!), so I was a bit anxious hearing that. The nurse reassured me that they would monitor me closely and move up my scans (originally scheduled for this December) if they felt it was necessary.
After drawing my blood to test the thyroid levels, and locking down assurances they would call me with results, I went on my merry way. I decided to choose not to panic until I knew more information. While I wouldn’t want cancer again, I know I can take it if it comes to that… but I am not going to worry until it gets there. I do promise to update here either way.
So in essence, that’s the downside to putting more thought into my physical health: anxiety over cancer recurrence. But let’s be real, that’s always lingering in every cancer survivor’s mind anyway.
So for the rest of you non-cancer afflicted men, you have no excuse.
My weekly column on The Good Men Project has been focusing on why men don’t discuss their health. The three I’ve written about so far are:
I’ve got a few more columns to pen about other excuses, but I don’t think any of them can match, “I’m worried I will develop another form of cancer.”
June is Men’s Health Month.
I challenge you – see your doctor by the end of the month. Whether it’s for an annual screening, to get something looked at, or finally get that cough fixed, you’ll be glad you did and healthier for it. To be blunt, don’t be an idiot and suffer in silence.
Male Breast Cancer Warrior, Wayne Dornan, Shares His Experiences and His Mission
When I had an opportunity to connect with Susan G. Komen, they also offered me the chance to speak with a male breast cancer survivor. While talking to Komen, a world-renowned organization, was enlightening, I have always truly believed that personal stories are what makes the difference in getting men to open up about their health. I had the great fortune of speaking with Wayne Dornan, the former Chair of the Aerospace Department at Middle Tennessee State University.
About eleven years ago, Wayne discovered that he had male breast cancer.
In his own words, he had no family history of any medical maladies, except for “hypochondria inherited from his mother.” One Friday morning, in May 2008, he was washing himself in the shower and felt a lump. He thought it was strange and became even more worried when he began toweling off. As he dried himself, he realized that his nipple was inverted, but he had no idea what these clues could mean.
Being a self-admitted hypochondriac, he immediately set up an appointment with his general practitioner. When Wayne removed his shirt, he remembers that his doctor’s face went from “a smile to a look of grave concern.” The doctor ordered him a mammogram, but when Wayne showed up at the imaging center, he was informed that the center didn’t do mammograms on men (which is a difference from what John Falk shared with me in October 2018). Already embarrassed by being the lone male around all these women, he went back to his GP and got an ultrasound instead.
However, the ultrasound was inconclusive, so he needed to have a surgeon take a biopsy. It was schedule for the following Monday. When the surgeon asked if he had any family history of breast cancer, Wayne replied with “Not until today!”
Results were available by Tuesday, but his surgeon had already told him, “no matter what the results are, you’ll have to come back because I don’t give results on the phone.” The only problem was that the surgeon was out of the office for the day.
“‘Wayne, you know I can’t tell you the results over the phone, I will be in my office briefly tomorrow morning, you can stop by then.’
‘I understand what you told me yesterday but I didn’t sleep last night, and I have already called your office four times today. Your nurse told me that they had received the biopsy report.’ I had been obsessed with negative thoughts since the biopsy and the thought of waiting until Wednesday morning to find out the news was to me, unbearable. ‘Are you OK, are you in a private place, and are you sure you want to hear the results on the phone?’
‘Yes I’m fine, you can tell me on the phone.’
My surgeon replied, ‘OK. The results of your biopsy are unequivocal; you have Invasive Ductal Carcinoma.’
Over the next 15 minutes I just walked aimlessly through the University campus as the diagnosis: ‘Invasive Ductal Carcinoma’ echoed through my mind. I felt numb, frightened, and very confused. For the first time in my life I thought about the possibility that I might die. Until that moment, I considered myself pretty healthy. I was a 56 year old, 6 foot, 185 pound male, and until then, apart from the inevitable broken bones while I was a teenager, I had never set foot in a hospital. So the idea of having breast cancer was to say the least, hard to swallow.”
He realized he had to face this head on and scheduled a mastectomy for the next day. That Wednesday also happened to be his 57th birthday… talk about a bad present.
After his mastectomy, Wayne underwent more treatment to eliminate his male breast cancer.
He began chemotherapy and went on an estrogen blocker. To put it mildly, chemo was not a cakewalk for him. To put it a bit more bluntly, it was “like a living hell.” He had thirteen weeks of chemo, with infusions every third week.
He became neutropenic (lacking a stable immune system) three times. At one point, he was sitting in what he had dubbed the “penalty box” – a chair where further evaluation was needed. His oncologist came to ask him how he was feeling and Wayne said he was fine. With a puzzled look, the oncologist said he was considering hospitalizing Wayne because he had no immune system. Since he felt fine, however, he was able to avoid that trip.
One way Wayne stayed positive was through refusing to listen to his body.
If he had nausea, he would would eat, and if he felt fatigued, he’d get up and get going. Wayne thought that his “body was like, ‘You didn’t listen to me so I’ll do it.’ It’s all mind over matter.”
Eventually, Wayne finished chemo in Fall 2008 and took Tamoxifen (an estrogen blocker) for the next five years to reduce the likelihood of a recurrence.
While reflecting on his journey, Wayne realized how little he had previously known about male breast cancer.
In another excerpt from his book, Wayne shares:
“Moreover, I was a male! That was the weird part, I had a variety of thoughts racing through my mind. I didn’t even realize that men could get breast cancer, or why did this have to happen to me. If I had cancer, why couldn’t it have been a male form of cancer?”
Though he holds a PhD in neuroendocrinology and had been doing medical research all his life, he had no idea that men could develop breast cancer. Because of his background, he dove into the literature and found there was not much information about male breast cancer. For his own journey, he had received most of his insights from reading about females with breast cancer. He’s happy to see that the American Cancer Society is now reporting gender incidence but not deaths.
Yet, he was still embarrassed about his diagnosis at first.
But then decided he wasn’t going to be anymore. He decided that he wasn’t going to hide it; it wouldn’t define his life. This changed everything for him. He realized that sharing his story could help another man through it. He said, “Its ok to be afraid, but you gotta get over that quickly and fight this thing.” When he became comfortable with talking about it, he felt better with his own diagnosis.
Realizing his experiences with male breast cancer could change the conversation, Wayne has “turned this unfortunate event into a passion”.
Wayne retired a few years ago and spends a chunk of his time relaxing on the beach, a point which he was sure to reiterate numerous times to me. However, the bulk of his time is spent educating people about male breast cancer.
He’s impressed by how the breast cancer focus has changed over the years to include men in the dialogue, and he commends Susan G. Komen for its commitment to doing so. However, he still regularly attends medical conferences to make sure the voice of the male breast cancer community is heard. In his words, “If you scream it loud enough, people will hear you.” He’s not bitter about the emphasis on pink and females with breast cancer, but he also won’t stop changing the way we think about male breast cancer.
As a doctor, he is uniquely positioned to influence other medical professionals. He wants men to stop being excluded from breast cancer clinical trials. No one is doing it for spite, but gut reaction is that it’s a woman’s problem. He has first hand experience with this, as he had qualified for a clinical trial for new chemo for early stage cancer to avoid heart failure, but was then disqualified because he was a man. Ultimately, his oncologist still got him into the study “unofficially,” but Wayne wishes that men can be part of this group without having to jump through extra hurdles. In speaking with researchers, Wayne notes that researchers have told him that they were going to make a concerted effort to remedy this.
He also targets the general public – both men and women – in education about breast cancer
Wayne reminds men that “They have breasts too, and they can get breast cancer. Cancer doesn’t discriminate – it goes after everyone.”
In both men and women, recognizing signs and catching it early saves lives. These include:
A painless lump or thickening in the breast or chest area
Lump, hard knot or thickening in the breast, chest or underarm area (usually painless, but may be tender)
Change in the size or shape of the breast
Dimpling, puckering or redness of the skin of the breast
Itchy, scaly sore or rash on the nipple
Pulling in of the nipple (inverted nipple) or other parts of the breast
However, for men, the average time from discovering a lump, to actually doing something about it is much longer – from many months to a year. This makes their prognosis worse. If they notice a change, Wayne recommends they see a doctor ASAP. If they are in a high risk group, they must be even more vigilant.
While cancer is a scary thing, Wayne also notes that treatments has changed so dramatically, but people don’t know that. Men are getting lumpectomies. Many people think it’s a death sentence, but that’s always not the case anymore.
At the end of the day, Wayne looks to a future without cancer.
Though he is presumably cancer free, he still doesn’t consider himself a breast cancer survivor. He says, “I’m a warrior – that’s what I am.” He compares facing breast cancer to training for championship fight. “You must train everyday, and be the best fighter you can, so that when the championship fight is over; you will be declared the champion!”
This fighting spirit resonates to his core. He believes that we are getting close to curing cancer and that a lack of sustained money for cancer research is the limiting factor. Today, he serves on the Science Steering Committee for Susan G. Komen in hopes of helping to get closer to this goal.
His ultimate dream? A world where his granddaughter doesn’t even know what breast cancer is.
Jason Greenspan Convinced Over 230 College Guys to Examine Their Testicles… In One Room At The Same Time
Welcome to the Band of Ballers! In this series on ABSOT, I’m turning over control to some other ballsy testicular cancer survivors and patients who have inspired me with their work in advocacy and awareness during and after their diagnosis. This month’s feature is all about Jason Greenspan, who organized the Ship’s Got Balls eventin November 2017. Enjoy!
My story started back in May 2012. I was only 18 and in my senior year of in high school. I already applied and been accepted to many colleges. The one I chose was Shippensburg University. (Editor’s Note: I was in my junior year of Shipp when Jason’s story begins. Our mutual connection to the University and ball(s) is actually how we got connected.)
Jason in high school
I had just finished planning for my prom. In my friend group, I’m usually the one who plans everything! Planning for this was fun, but also a challenge. I already had the limo reserved, the schedule made, and was ready to have the time of my life. But little did I know that my life was going to change in an instant.
I was at home, watching television and had a simple itch.
It ended up being the most important itch of my entire life.
I noticed something hard—something I didn’t remember feeling before. Clearly, something wasn’t right. It’s difficult to describe, but I had this gut feeling that it was something horrible. I never had had that feeling before—ever.
I went upstairs to tell my mom. She said to try not to worry too much about it, but she’d make a doctor’s appointment. Within a day or so, my mom and I went in for my doctor’s appointment. He checked me. Then, he said the words that I never thought I would hear:
“YOU HAVE CANCER.”
There was so much running through my head. Being diagnosed is something that I never thought would happen to me! I tried my best to hold back my feelings, but a couple of tears ran down my face, anyway. Without knowing about this type of cancer, the first question I remember asking him was, “How long do I have?” I started to remember random events in my life, from when I was a child, up until that moment. I wanted to cherish those memories—I feared there wouldn’t be many more.
After reading more information about testicular cancer, I quickly realized that it’s one of the most curable cancers out there.
I was lucky in that regard, but sometimes others aren’t.
The morning of my surgery, I went to the hospital, got checked in, and sat in the waiting room. My grandparents, mom, uncle, stepdad, and step-brother all were with me. It was incredible to have their support! Luckily, the surgery didn’t take long and I couldn’t wait to get home.
So now, after having my surgery, I thought that everything was okay, and my nightmare was finally over.
Jason mid treatment
It turned out that it hadn’t even started.
After taking many more tests, such as X-rays, CT scans, and general checkups, it turned out that cancer had spread past my one testicle. Now with an official diagnosis of Stage IIA non-seminoma testicular cancer, I had to think of further treatment.
I had to meet with many oncologists until I found the one that would be the best fit for me. The one I chose, though, is phenomenal. He told my mom and me what will be happening and how to move further with my treatment. At this point, I needed to have chemo. I couldn’t believe it.
The first thing that I think of when I hear the word “chemo” is hair loss. I couldn’t imagine losing my hair. It’s something that had always been very important to me, and everyone who knows me knows that. That was my biggest fear of the entire experience… in the beginning at least. I found out that I needed to have nine weeks of chemotherapy.
My first day of chemo was okay. I remember walking in, sitting in the chair, getting hooked up, and asking my mom, “This is it? Chemo won’t be hard!” I later found out that this statement would be far from the truth.
Yeah, the first day of chemo wasn’t terrible, but that was only the first day.
Towards the end of my chemo treatment, I needed to have a lot of pricks from the needle each and every day I was there. I could have up to 6 pricks on a bad day, but it was still usually 2 or 3 pricks even on a good day. Unfortunately, this happened because after having chemo for so long, the nurses were no longer able to get a straight path with the needle. I remember one day when I was sitting in the chair, the nurses were trying to get the needle in my arm for me to receive my treatment. It was so bad that it must have been at least eight times!
Jason, years later
All I kept thinking to myself was “Why me?” That day was the only day during the entire nine weeks that I cried, at my treatment facility at least. The only thing on my mind was going home and having this terrible nightmare be over.
All of the nurses at my treatment facility were wonderful, very kind, and caring people. They were not able to see me much, though. Whenever I went into the chemo room, I would always put my hood from my sweatshirt over my head—far enough so that my entire head would not be visible. By doing this, it helped me so I wouldn’t be able to look around, which got me sick. Every time I would see an IV bag or a person in one of those chemo chairs, my stomach would start to hurt. I joked after the fact, that if I went to visit the nurses after I was feeling better, they probably wouldn’t even remember me because they were never able to see my face!
The entire cancer experience has let me meet many amazing and inspiring people.
Now a cancer survivor for over six years, I have been able to meet other cancer survivors, caregivers, and other people who have been affected by cancer in some way.
In my senior year at Shippensburg, I got the idea for an event, that would later become known as Ships Got Balls: World Record Attempt 2017. I realized how few college students truly knew about this type of cancer. It was also my last semester of college and I wanted to leave my legacy on the campus for all the work I’ve done with raising awareness for testicular cancer.
Guys at the event
Ships Got Balls: World Record Attempt 2017 was a Testicular Cancer awareness event reminding males at Shippensburg University and in the surrounding communities to perform monthly testicular self exams. The event was a Guinness World Record Attempt for the “Largest Simultaneous Self-Check for Testicular Cancer.” The attempt took place at Shippensburg University on November 6, 2017. The first half of the event featured a fundraiser organized by the Interfraternity Council called, ‘Shave the Date’ to raise awareness for men’s health during the month of November, while the second half involved the actual mass self exam.
The attempt was designed to bring awareness and knowledge about testicular cancer to college students and to the surrounding communities.
This type of cancer seems to be uncomfortable for men to discuss and there is no reason for that. Instead, we all did it together and made an impact together!
We had many speakers at the event including the retired principal of Shippensburg Area Senior High School and also former Ship alumnus, Justin Birckbichler! (Editor’s Note: I didn’t even have to add the exclamation point – he did that on his own.)
Jason presenting the official record, with Shippensburg President Laurie Carter and John Yarwood, PAC from Summit Health
All of the students in attendance had an incredible time and left more educated on self-exams, along with a fantastic experience with their friends and fraternity brothers.
We ended up getting 236 males to participate, which beat the previous record of 208 men. We officially received the Guinness World Records title, which was an amazing feeling! It was presented to the Testicular Cancer Awareness Foundation, Shippensburg University, and Summit Health. All of us partnered together to create this incredible event. If anyone is interested in having their university attempt the record, please let me know. I would love to work with you!
Testicular cancer is the most common type of cancer in males ages 15 – 44 years old. It is also 99% curable if detected early which is why it is so important to discuss this topic with college students.
Hanging In There is a Film That Wants You to Touch Yourself… But Not Like That
Following Band of Ballers alumnus Matt Wakefield’s (AKA Flatbagger) various social media accounts is one of my guilty pleasures in life. While I thought I was good at finding different objects to turn into testicular cancer awareness pictures, he definitely hits it out of ballpark. Through him, I learned about Manhood: The Bare Reality, which I had the opportunity to read and review in the fall. More recently, I saw he posted about his participation in a film called Hanging In There.
Intrigued, I did some research to learn more. According to the IMDb summary, the movie follows the story of a British man named Jack Jackson.
“Jack has a good life. Lovely wife, nice house, good job, great mates. All he wants on top of that is to be a dad. But life has a surprise for him: Testicular Cancer, and it’s about to change his life forever.”
Darren, “Jack”, and Geoff
I also discovered that the movie was based on the stage production ‘Hanging In There’ by Geoff Saunders, which has been called “the play that could save lives.” Suffice it to say, I was hooked.
Like the overall tone of ABSOT, Hanging In There does a great job of blending information about testicular cancer with spots of humor.
Perhaps my favorite line in the entire film happens early in the film when Jack goes in to have a lump on his testicle examined. His doctor is a female (which reminded me of me going in to get my own lump checked out by a woman) and she refers him to a specialist.
Before parting ways, she says, “Don’t worry; You’ll be in good hands.”
Without missing a beat, Jack quips, “Will they be as good as yours?”
I’m calling it now. Hanging In There is destined to replace Gone With The Wind’s “Frankly, my dear, I don’t give a damn” as the first spot on AFI’s Top 100 Movie Quotes.
Beyond the witty moments, it does also take a poignant look at the stigma around testicular cancer.
Before experiencing the “good hands” of the doctor, Jack tries to play the lump off as not a big deal. Even when he finally decides to call for an appointment, he hesitates in saying the location of his lump, which again reminded me of my own experiences.
There’s a particularly powerful scene when Jack asks his pub friends if they do regular self exams. While one friend says that he absolutely does, the other man is offended and refuses to talk about it. Sadly, this is based on fact, with various studies finding that the majority of men don’t know how to do a self exam or outright refuse to talk about their health.
Directing a scene in a hospital
Beyond the societal implications, the film does a great job at looking at the impact of cancer on a marriage, friendships, the sense of masculinity and self, and more topics we don’t usually see in cinematic adventures. The movie truly is a complete package… unlike Jack, Geoff, and myself.
After finishing the flick, I reconnected with Geoff and Darren again for a behind the scenes look.
ABSOT: How much of Hanging In There is true versus fiction?
Geoff Saunders (writer and man behind the story): The sequence of medical appointments and procedures is based entirely on my experience, as are the physical and psychological side-effects they produced. The rest of the story is fictional, but informed by my life experiences.
Darren Scott (director): I think Geoff was able to heighten the drama in the film by filling in certain gaps from his own story with ones he’d heard about from other testicular cancer survivors.
That way, our protagonist Jack was able to be an ‘Everyman’ character that accurately covered the range of possibilities for someone with testicular cancer. Certainly the responses we’ve had from other survivors is that they identified with large aspects of Jack’s journey.
When we were filming, I was aware of some scenes being a bit more real for Geoff, and I’m guessing they were the scenes closest to his own personal story. I do know that the scene where Jack is told he has cancer, complete with that extraordinary response, was virtually word for word as it happened.
ABSOT: What was the road it took to go from your own story to a feature film?
GS: Hanging In There started as a stage play, written while I was recuperating from my orchidectomy in 2002. Darren Scott directed the first production in 2006 and the play was revived in 2007. In 2014, Darren contacted me to ask whether he could film the play. After a little hesitancy because I wondered if this play could work as a film, I agreed to write a screenplay… and it all began.
The original stage production
ABSOT: How did you get Hanging In There filmed? According to the video description, the film was “made with the generosity of businesses, hospitals, and medical professionals.” Can you elaborate on that?
GS: There are lots of stories to be told of people’s generosity in support of the project of filming Hanging In There. People gave their time to be supporting artists, with several spending two consecutive nights in a pub where we filmed four scenes, some gave cash to our Kickstarter appeal and others found us locations that we could use for free… We definitely saw the best of a lot of people!
For example, within twenty minutes of posting a message on Facebook about needing a doctor’s office as a filming location, a Practice Manager saw our request and wasted no time in making his offer. He then set about organising the location for us and even found us some supporting artists.
DS: Most of the time, the fact we were making a film about testicular cancer, was enough to open up all sorts of doors. We used genuine hospitals, bars and cafes and even a football ground all for free. A world class company called Filmlight even graded the film for us at no charge once they heard about our ambitions to make this film happen.
ABSOT: What has been the response to it so far?
GS: We’ve had very positive responses! People have said they’ve been moved by the story and entertained by the comedy. But they have also been responsive to the message, which is that early detection and treatment of testicular cancer can save your life.
I am pleased that everyone can find an ‘angle’ on the story that they connect to, whether that angle involves cancer or one of the other themes: communication between couples, dealing with crisis, friendship, or men’s fear of admitting vulnerability.
I have had some great conversations with people who’ve seen the film and I hope that everyone who sees it starts having those conversations too and gets the subject of the film ‘out there.’
DS: Our motivation for putting on the play, and subsequently making the film was simple. “If we could save one life, it would be worth it.” We know that someone who saw the film at our London Premiere was motivated to go and see his doctor and a few days later was diagnosed with prostate cancer which was treated quickly. He calls this film a ‘life-changer’. It’s humbling our film was able to reach out in such a powerful way.
ABSOT: What are the plans for Hanging In There going forward?
GS: My hope is that lots of people will download and watch and share the movie and get the word out to as many men as possible. I am very pleased with the work we have done, so I want to share it with the world!
ABSOT: What message do you want people (specifically men) to take from this?
GS: Simple. Check your balls. Find something? Go to the doctor as soon as possible.
Your life is in your hands.
In closing, I recommend that you check out Hanging In There
I Walk Away from Relay For Life With Three Words That Define My Experience
After a great experience with Relay for Life 2018, I decided to make another appearance this year, which occurred this past Saturday. I decided to attend as a cancer survivor and focus on connecting with other survivors, rather than being a team captain again.
Last year, I found three lessons from Relay For Life: celebrate cancer survivors, fight back against cancer, and remember the fallen. This year, three words resonated with me as I spoke with other survivors, patients, and caregivers: Stories, Hope, and Journey.
No longer in my sack… but always in my heart
Relay for Life means “Stories”
The first lap of Relay for Life consists of all cancer survivors walking together to kick off the day. This year, I happened to get to hold the banner that announced us as cancer survivors, which I am choosing to believe has more to do with the fact that I’m just such a ballsy individual… instead of having a last name in the beginning of the alphabet.
While walking with two other awesome people (who also happened to have A or B last names), we shared our stories. One woman had faced three separate cancers over twenty years, but was fortunate enough to never require any treatment beyond surgeries. I called her an overachiever, since one cancer was enough for me. She turned my words right around on me by noting that I was actually the overachiever since I ran the chemotherapy gauntlet. This light hearted take on our respective stories helped set my day off on a good foot – literally.
Another favorite part of Relay for Life is the Survivor and Caregiver Luncheon.
This is a time and space to connect with other people who just inherently “get it,” in a way people who still have all their body parts and non-mutated genes can’t. The BBQ feast is just an awesome – and delicious – bonus.
Over pulled pork, cole slaw, and potato salad, I had a conversation with a breast cancer survivor. While listening to her, I couldn’t help but draw parallels between our stories. We were both diagnosed at what we thought was “too young” for cancer and our stories progressed quickly once discovering a lump. Both of our initial diagnoses and surgeries occurred within a span of less than one month in the fall. Though we had never met before, we had a common thread woven through our similar stories.
The power of a shared story is a thread can can bind cancer survivors, patients, and caregivers together without any visible commonalities.
The event provides “Hope”
This year’s theme for Relay for Life was Star Wars, which was fitting since it took place on May Fourth AKA “May the Fourth Be With You.” The first (or fourth or sixth, depending how you look at it with the prequel trilogy, Solo, and Rogue One) movie in the Star Wars series was subtitled “A New Hope.” Fittingly, the word “Hope” was chosen as the theme for the day, most clearly illustrated by a large sign that spelled out the letters in bold print a la the LOVE sign in Philly.
My boy Chewbacca and me
But it’s more than just the sign that made hope come alive. Within my “campsite,” there was a woman whose husband is currently fighting testicular cancer. We had an opportunity to speak a little and I shared my experience with her. While it sounded like his stage was more advanced than mine, I offered to help however I could and gave her my contact information. As we parted ways, I saw A New Hope gleaming within her eyes. I’m sure countless more of these interactions occurred as friends, family, and community members walked together and shared why they chose to come out to the track.
While cancer is a scary word, the more powerful word of “Hope” can wipe out the Dark Side of this disease.
Relay for Life means “Journey”
I’ve often struggled with which word to describe my trials with cancer. At times, I use story, sometimes I use experiences, but I generally revert to using the word “Journey.” I’m never sure if that’s the right word to use because it reminds me too much of the Oregon Trail – and I don’t know if people even get dysentery anymore.
During the aforementioned lunch, I spoke with another survivor who faced cancer back in the 1990s, when I was just a wee lad with two balls. He shared how he’s made it a point to attend at least one Relay for Life every year since then since he knows how important they are to the cancer community. He also told me that one of his best memories from cancer (which is an odd turn of phrase) is when he was told by his doctor that he “didn’t have to come back anymore” since it had been so long since his diagnosis. I look forward to the day that my journey reaches that point.
My new friend and me
As we parted ways, his wife said, “Good luck on your journey – because that’s what it is. Each day is something new and you never know what you’ll get.” To hear another person so closely affected by cancer refer to it as a journey shows me that I might be onto something.
Cancer can best be described as a journey, with all of its ups and downs, though luckily we don’t need to try to fjord a river unlike the intrepid travelers on the Oregon Trail.
Relay for Life is truly an amazing experience. While I didn’t stay for the entire day like I did last year, I’ll have these memories and more (such as a bouncy house race) to keep me inspired and ready for next year.
Last year, I closed out the post by saying I wanted to take a more active role on the Survivor and Caregiver Team. However, I totally dropped the ball on it this year, but I’ve already spoken with the chair about doing it for the 2020 season.
The most important thing to remember isn’t about the steps taken, the laps completed, the money raised, or the total number of attendees. It’s about remembering why we do this:
ABSOT Sits Down with Susan Brown of Susan G. Komen to Learn About Male Breast Cancer
As ABSOT continues to expand its focus on other men’s health issues, I’m eager to expand my own knowledge of various conditions. Specifically, I’m interested in learning more about prostate cancer (since my investigation into The Urology Foundation’s study showed me just how lacking I am in this area), colon cancer, and male breast cancer.
Susan Brown of Susan G. Komen
I had the opportunity to speak with male breast cancer survivor John Falk back in October 2018, but recently I had the opportunity to connect with Susan G. Komen, which is arguably the world’s best known and largest breast cancer organization.
I spoke with Susan Brown, the Senior Director of Education and Patient Support. In her role, she oversees the information about breast cancer on the website, the patient helplines, and the treatment assistance program. Most interestingly to me, she has an oncology nursing background. Prior to coming to Komen, Ms. Brown worked in an imaging center where they saw both men and women.
During the course of our conversation, I had a goal to understand two main topics – what must men know about breast cancer and how do we let men know that breast cancer isn’t just for women?
What do men need to know about male breast cancer?
First and foremost, Ms. Brown said that men simply need to know that they can get breast cancer. Often, this “comes as a surprise to both genders,” as we don’t necessarily think of men having breasts. They also need to be able to recognize signs and symptoms of male breast cancer, including:
Lump, hard knot or thickening in the breast, chest or underarm area (usually painless, but may be tender)
Change in the size or shape of the breast
Dimpling, puckering or redness of the skin of the breast
Itchy, scaly sore or rash on the nipple
Pulling in of the nipple (inverted nipple) or other parts of the breast
These symptoms may also be signs of a benign breast condition. Some of these signs can be easier to notice in men than in women, since men tend to have much less breast tissue than women.
Regardless, Komen feels that men need to know this information to help get care. Even as a self-proclaimed men’s health activist, I didn’t know all of these signs. Suffice it to say, I felt like a boob for not knowing this.
Do men need to do breast self-exams?
I constantly repeat the need for men to do testicular self-exams, and I was curious what the current recommendation is for breast self-exams.
Ms. Brown shared that it should be a routine procedure for men who are at high risk for breast cancer. This includes men with known gene mutation, such as BRCA1 and BRCA2. On the topic of BRCA genes, which I discussed in my interview with Dr. Nussbaum, it’s important to note that everyone has a BRCA gene.
When they work properly, they actually protect against tumors, but it’s when they’re mutated that they create a higher risk for developing breast cancer. Others at a high risk include those that have a member of their family in which breast cancer mutations are present, have a personal history of radiation therapy for other cancers like Hodgkins, or have other conditions with genetic mutation.
However, for the non-mutated, average man, breast self-exams are not recommended. Looks like the X-Men need to be doing regular self-exams, but the Avengers are exempt.
How can men break down the thought that it only happens to women?
Shifting gears, I wanted to discuss what men can do to eradicate the misconception that only women can get breast cancer. Once they know that they can get the disease and understand the warning signs, how can they help other men to understand the same?
Simply, Ms. Brown recommends that those in the know just talk about male breast cancer – with both sexes. Knowledge is power and this is exactly what happened 40 years ago with women, which increased detection and screening for breast cancer. Even though breast cancer in men is rare, it does happen. The stats don’t lie – we need to talk about it.
In the U.S., less than 1 percent of all breast cancer cases occur in men.
The lifetime risk of getting breast cancer is about 1 in 1,000 in U.S. men compared to 1 in 8 for U.S. women.
In 2019, it’s estimated that among men in the U.S., there will be 2,670 new cases of invasive breast cancer and 500 breast cancer deaths
Survival rates for men are about the same as for women with the same stage of breast cancer at the time of diagnosis.
However, men are often diagnosed at a later stage of breast cancer. Men may be less likely than women to report symptoms, which may lead to delays in diagnosis.
Ms. Brown emphasized the importance of having these discussions with both men and women. She felt that women in many households make a lot of healthcare decisions and they can notice changes in the men in their life. Especially paired with the information from the MENtion It surveys through the Cleveland Clinic, it’s very clear that women have a key role in men’s health.
Making sure everyone is aware of health issues and holding everyone accountable for taking their health seriously is the sort of world I want to live in.
What does Komen plan to do to raise awareness about breast cancer in men in 2019 and beyond?’
Finally, I wanted to know what Komen had on the docket to make male breast cancer more visible going forward. It turns out that they’ve already got the ball rolling on this titillating topic.
They’re committed to being “quite deliberate” when talking about breast cancer, by adding “and men” to their statistics when they are discussing incidence rates and impacts. They have created a number of educational materials aimed specifically at men, including a resource entitled “Men Get Breast Cancer, Too,” a helpline, support groups, and more. To help keep all the resources they gave me in one place, I created this page on ABSOT for male breast cancer resources.
Furthermore, they are recognizing that breast cancer is synonymous with pink, which isn’t an inherently masculine color, despite my high school prom tie color. A lot of their resources for men with male breast cancer either omit the pink entirely or have a mix of blue and pink, which is more appealing for men. Additionally, they try to use words like ‘pecs’ or ‘chest’ when talking about anatomy, since men may not make the inherent connection that it’s the same thing as breasts.
In closing, I have a challenge for you.
Take one thing you learned about male breast cancer and share it with someone you care about – male or female. In turn, encourage them to share it out to someone else.
Together, we can make a nipple ripple effect that will add to the the world’s collective chest of knowledge about male breast cancer.